Post-Pandemic Patient Engagement

Did you launch a new product or engagement effort during COVID? If so, you’re likely fighting an uphill battle trying to connect with patients.

Traditional patient outreach relied heavily on leveraging in-person interactions. Conferences and conventions were a convenient and direct way to make a disease community aware of a new treatment coming to market or build awareness about an upcoming clinical trial. Once those engagements went virtual, the ease of engaging with your target patient community via in-person connections was eliminated. Drug manufacturers continue to struggle with how to “digitize” their outreach and compete for attention through platforms like Facebook and Instagram, further compounding the problem.

So what should you do?

First, locate the advocacy groups for your target population. Ask them how they continued to engage with patients/families during the pandemic and find out what works. Every community is different, I saw some amazing success for one community with webinars while another found their Facebook group had exponentially more traffic. Based off that information, you can start planning next steps.

Another approach is targeted social media advertisements. I’ve seen a lot of this on Facebook and Instagram for the autoimmune space, and even forwarded trail recruitment links to friends who have expressed an interest in participating in clinical research. Don’t be afraid to try it out, but as I’ve mentioned in previous posts, know the hashtags your patient community uses. Those hashtags are a great way to get on a patient’s radar and appear while they’re scrolling their feed(s) during the day.

Lastly, prepare for in-person engagements again. People are anxious to get back to normal! It has been great seeing conferences back in full swing and patient communities meeting up for the first time in two years. Even if you’re engaged with the community online, putting a face to a name in the flesh is invaluable. It builds trust and helps foster relationships, the foundation of patient engagement.

I think we have all experienced Zoom fatigue at some point during the last two years, so don’t be afraid to get creative. As with all digital engagement, it’s critical that your content be engaging, direct, easy to understand, and reflect the patient community you’re trying to reach. I always chuckle when I think about a conversation I had a few years ago discussing advertisements for ITP. There was a photo of someone playing soccer, definitely NOT something a person with low platelets should be doing! I like to bring that up when talking about digital patient engagement because we tend to focus so much on clicks, impressions, and engagement metrics that we fail to think about how the media appears to the target community.

So get those creative juices flowing, do some research on the patient community you’re trying to reach and jump in!

Assessing Patient Communities- Are You Listening?

With the continued focus on patient inclusion, patient centricity, patient engagement, and putting patients first, companies involved in every aspect of healthcare are creating programs to accomplish their goals. Whether the focus is creating a new app or developing a novel therapy, patient insights are critical to every endeavor. However, each patient community is different, so while some companies have built fantastic programs that optimize working with a specific population, many times those programs don’t translate the same way with a different group.

What seems to be missing are capabilities assessments of patient groups or disease areas. Understanding the ecosystem is essential to building relationships for whatever you’re trying to accomplish. Need to recruit for a clinical trial? You must understand which groups and patient leaders can spread the word. Looking for patient insights for a new technology platform? Your best bet is first grasping where patients are communicating online. Need patient data? Better understand the level of education that the patient community has on data sharing and who controls any registry platforms (if they exist).

Looking at the bleeding disorder community as an example, the groups that comprise our family are vastly different. Obvious differences include diseases themselves: Hemophilia, VwD, ITP, etc. Then add in the differences between men and women, children, teens, young adults, millennials, Gen-X, and baby boomers. Each of our groups share a common bond that we have a blood disorder, but our experiences, needs, and treatment options are very different. I have been fortunate enough to meet a lot of fantastic women with bleeding disorders through the Hemophilia Federation of America. It has been incredibly rewarding discussing our challenges, triumphs, and frustrations living with rare blood conditions. One overall theme was the need for diverse programming. We encounter different obstacles for treatment and care at different milestones in our lives, or unfortunately all at once thanks to COVID-19.

Industry’s response to learning about the patient odyssey are things like patient advisory boards and market research. While these tools are useful and result in solid insight, it does not truly capture the struggles of patients and their caregivers. I’ve had ITP for over six years, no one has ever asked me about side effects from treatments that have derailed my life, or what kind of things I would tolerate when trying a new medication. This is the gateway to a truly enlightening conversation around my disease. It’s also a better gauge of what kinds of information and supports programs are needed when launching a new therapy.

A real annoyance for patients are repetitive programs that seem great, but deliver little assistance. First thing that comes to mind are Apps. How many of these can we download and forget about before industry truly understands our needs? Pain and symptom tracking seem very popular for many chronic conditions, but if we can’t export that data to our doctors in a variety of formats (email, paper copies, uploading into EHR platforms), taking the time to track our issues is useless. Another missed opportunity is building platforms that allow caregivers to also track their observations/experiences with patients. For parents of children with complex medical needs, this has to be super simple, no one wants to sit down at the end of a long day and spend 45 minutes inputting information.

So how does industry truly capture the needs of patients? It starts with relationship building. The people making connections into patient communities need to be patients themselves. Empathy and understanding are the cornerstones of facilitating the conversations needed to truly map disease experience and comprehend what patients need. I have participated in countless projects where patients and industry collaborate, but the most successful ones are led by industry members who can personally relate to us.

COVID-19 Vaccine Incentives vs Clinical Trial Reimbursement

This week, former congressman John Delaney (D-Maryland) proposed that $1500 stimulus checks be issued to people who get the COVID-19 vaccine. While I have been yelling from roof tops about patients who cannot get vaccines for medical reasons (and those reasons include ICU visits and/or death), this hit another point that has been equally as aggravating for many years. As an attorney, I am always questioning why biopharma companies refuse to cover the out of pocket expenses for patients participating in clinical trials. These expenses include things like gas, tolls, parking fees, childcare, and meals.

I have been told by people in legal/compliance that this is due to those reimbursements being seen as a form of “payment” that could influence a patient’s decision to participate in a trial. Of course, that sounds pretty ridiculous to most patients, we chat with our friends who have participated in trials and hear expenses being covered. The lack of consistency is not only annoying, it highlights a major problem with trial design on the industry side. Perhaps it can be attributed to a lack of meaningful patient engagement early in the drug development process, or a budgeting oversight. Either way, it is totally unacceptable and truly hurts creating inclusive trials.

So back to the stimulus check tied to the COVID-19 vaccine, it is maddening to see this idea being celebrated while patients participating in clinical trials are expected to foot the bill. I strongly believe it is time to have a conversation with patients, industry, and regulators about clearly defining reimbursement for trial participants, especially now that we have expanded our focus on diversity and inclusion in clinical trials. Far too often I hear stories of families struggling to afford childcare, balance schedules, manage school assignments, and taking care of pets while receiving an experimental therapy. Despite Sponsors and CROs collaborating with patient groups more often, we are still far off from truly addressing the needs of patients and families participating in clinical research. How is making a stimulus check contingent on getting a vaccine better than reimbursing costs associated with participating in clinical trials? Why would a stimulus check not be viewed in this manner as a “influencer” for participation, but covering the parking fee at a trial site is forbidden?

As we continue to see COVID-19 shift healthcare, it is important that patients push to see the same advancements, innovation, and sense of urgency occur within their communities. This story struck me as one area where we really need to be doing more to help patients and families participate in clinical trials. Financial burdens prevent participation, can cause patients to drop out of trials, and slow down enrollment. Time is money for industry, and time is of the essence for patients.

Let’s cover the costs associated with participation in clinical trials and stop pointing fingers for not doing so, patients know better.

The Harmful Embrace of “One Size Fit All” in Drug Development

In light of the news coming out from NurOwn this morning, it’s clear that the rare disease community needs a wake up call. 

NurOwn has shown great results in ALS patients with less-advanced disease. It’s important to note that disease progression for any condition varies from patient to patient. In addition, patients with more advanced ALS were also included in the trial. So the varying disease states absolutely play a role in how the data appears at the end of the trial. But instead of looking at the overall picture, why are we not looking closely at the group that had a “statistically significant” response to NurOwn? 

The rare disease community needs to stop thinking there is a “one size fits all” approach to drug development. We always complain about Pharma silos, and how it’s so hard to work with industry. Well, it’s hard to work with patient groups and the rare disease community, too. We create silos, letting our rare brothers and sisters fight alone. 


I can tell you from personal experience that advocacy groups who think this way end up hurting patients. A decision made in the mid-2000s on Rituxan still hurts myself and other patients like me. I do not have guaranteed access to my chemotherapy drug that stops my immune system from killing my platelets. It is an “off-label” therapy, which means my doctor, the hospital that administers it, and my insurance company all have to agree to dispense it.

All of this could have been prevented by conducting a clinical trial and working on identifying the ITP patients who would likely respond (something I did myself in 2014 when I made the decision to use the therapy). However, that did not happen. Why? Since not ALL Immune Thrombocytopenia patients responded, no one felt it was a worthy endeavor. It left patients like me to struggle and fight based on an arbitrary assessment from industry and a patient group that was suppose to represent every ITP patient. They didn’t represent all of us, people like me were left out. We are hurt by this mistaken belief that drugs to treat our rare diseases are only worthy under a “one size fits all” approach.

The “data” and “charts” looking at Rituxan use in ITP patients wouldn’t look good if you looked at EVERYONE who was given the drug. But if you looked at the patients who fit certain criteria, you would see an AMAZING response with a certain group of ITP patients. That’s where we are with ALS right now, and it’s where we will be in the months/years to come as more orphan drugs go through the FDA. You can’t just read the headlines of an article about clinical trial data to get the total picture. Unfortunately, this happens in disease groups and people quickly dismiss promising therapies. It has to stop, the rare disease community is better than this.

I sincerely hope the ALS community pushes for approval of NurOwn and applies pressure to the FDA.

I look forward to lending my voice to this fight, because all rare diseases need to support each other.

Do you suffer from Sciatica like me?

Sciatica is a painful condition that affects millions of Americans each year. The pain from this condition radiates from the lower back down into the leg. Researchers are studying a non-surgical treatment option to relieve sciatica pain resulting from lumbar disc herniation. All study-related care will be provided at no cost.

This study is for people who:

  1. Have sciatica pain resulting from lumbar disc herniation

2. Are 30 to 70 years of age

Learn more about the trial here.

If you’re interested in learning more about clinical trials, click the link below! Participating in clinical research puts us one step closer to potential treatments for our conditions.

Learn why I’m talking about Clinical Trials

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The Limits of Patient Insights

We know the buzzwords, your organization’s leadership has been stressing it for a while, it’s everywhere. Patient engagement, patient insights, incorporate the patient voice. You likely can’t make it through a work week or conference without hearing these phrases at least a dozen times.

The problem is no one is speaking about the limitations of patient insights. Whether you’re exploring clinical trial design, patient recruitment strategies, developing an assistance program, or marketing a product, at some point you hit a brick wall. Most people in the industry will acknowledge these limits amongst colleagues, but it is difficult to discuss this openly without fear of angering patient communities. Since I am a patient myself, I am not afraid to discuss it. I’ve seen it in every project I have been involved with. It’s time we have this difficult discussion, and strategize on ways to overcome the barriers. Time is money, and to move your projects forward, the strategy will look different.

The Challenges

  1. Finding the right patients: Depending on the project, it may be hard to find strong voices with valuable experience to give actionable feedback. What type of experiences do patients need to have to contribute to your project?
  2. Creating a dynamic among patients to encourage thoughtful discussion: Putting a group of patients in a room who don’t know each other is awkward, and hinders the exchange of ideas until everyone is comfortable with each other.
  3. Asking the right questions: Open ended questioning or just asking for feedback around a general idea is hit or miss. Sometimes patients will give you valuable ideas, but many times they miss the mark completely.
  4. Following up: After getting ideas and insights from patients, more questions remain. Perhaps you need more feedback. If the advisory board you put together has disbanded, what do you do?
  5. Legal/Compliance issues: This is one of the greatest challenges for Pharma. Often, these parts of your organization are dismissing patient input and ideas due to legal/ethical considerations.

The Opportunities

  1. Building a team of patients: Your ideal insights may come from patients outside of what you envision. They may have a different disease than your project is involved with and have a career unrelated to healthcare. However, their input is exactly what you need. Think about what caregivers or siblings could add to the discussion. Bring in someone who is a patient but also aware of your organization’s goals to help guide the discussion.
  2. Implement team building between your employees and patient advisors: The best results come when your patients and employees feel comfortable with each other. Establish trust and friendship, then the honest thoughts, opinions, and feedback will flow. You want both positive and constructive feedback, which comes out easier via an established relationship.
  3. Plan questions ahead of time: Work with your team to establish what you want to know, what you don’t know, and how patients can fill those voids. This is a critical part of planning patient advisory meetings and gathering feedback. Great planning results in great results!
  4. Establish a lasting relationship: Just because a project is over does not mean your relationship with the patients you work with has to end. Keep in contact and consider establishing a plan for regular interactions between your employees and patients. Especially if you have had success with using their insights to improve your projects.
  5. Bring Legal/Compliance in the room: If you spend the time meeting with patients and your team, bring in your legal and/or compliance colleagues too. They don’t interact with patients very often, if at all. The conversation will be beneficial, especially if they can ask questions and figure out ways your organization can implement their ideas.

These problems and opportunities may seem like common sense approaches, but actually implementing them can be arduous. Working with patients is difficult, most of them do not have adequate experience within the pharmaceutical industry. They have no knowledge of laws and regulations that govern your company, or how your teams communicate and collaborate.

If this is something your organization is seeking to improve upon, let’s strategize on ways you can maximize your work with patients.

Authentic Communication in Healthcare

If you follow along with #hcldr chats on Tuesday nights, you may have caught an interesting discussion on communication. It’s a core part of our daily lives, it is essential to success in a health care setting, but so many people and companies miss the mark. The big question is: how do we define and implement authentic communication techniques?

The first thing I want to point out is that conversations between doctors and patients are communications that remain confidential. Besides encouraging more dialogue in this dynamic, the issues with building authentic communication between patients and providers are pretty straight forward. You need time to have the conversation, trust between the parties, and opportunity to follow up.

Healthcare companies are in an entirely different universe. It doesn’t matter if you are in technology, patient services, biopharma, research, or data, authentic communication is critical to your success. The chat brought up some really good points about the difference between communication versus broadcast. I see so many companies missing the mark in this area. Either too many broadcasts or too few. Then problems with content that’s shared in comparison to original ideas. So let’s break down some common mistakes and how to correct them.

  1. No balance: Some companies (especially in the biopharma and HealthIT space) tend to stick with broadcasts of their accomplishments. While it is important to shout those victories from the rooftops, connections with patients and consumers will be facilitated through interactions that are conversation based. This is especially true if you develop platforms/programs that are to be used by patients in their daily lives. A personal connection and warm conversation can put you ahead of the competition.
  2. Not enough original content: Probably one of the most common slip ups I see on social media, companies who spend a lot of time sharing great information but not creating their own. It’s easy to get caught up in circulating great content, but you need to have an independent voice on all channels. Broadcasting accomplishments, having employees write blogs, asking engaging questions and then interacting via feedback are all easy ways to produce original content.
  3. Not soliciting feedback: You need to ask your audience what they think is missing. Do you engage enough? Are there things that people would like to know more about? Are you sharing too many articles on a specific topic? Think about that friend that you like a lot, but get sick of quickly because they only talk about one subject. Your communications can come off that way too, even on social media. This is why feedback is important. But don’t fall in to the next trap either.
  4. Feedback is not confidential: If you want honesty from patients, you need to keep their insights private, unless they give you permission. You will receive straightforward critiques if the conversation is kept private. I don’t know many patients who would feel comfortable facing a healthcare provider after they gave negative feedback about their experience. That being said, you should also leave the option open for people to elect to have their identity shared. Especially if someone is praising your work!
  5. Consistency is absent: I see a lot of healthcare companies engaging with patients in short bursts and then they go dark for a long period of time. Patients end up forgetting about you if you’re not consistently engaging. The best way to remain engaged is to plan ahead. Map out the year. Does your organization participate in awareness days/months? Do you celebrate certain milestones or anniversaries? These are easy ways to facilitate connections in between important communications.

Avoiding these five mistakes can help you craft authentic communication with patients. If you’re struggling to change the way you communicate, let’s collaborate!

Maximize Your ROI Working With Patients

No question the hot topic in healthcare is utilizing patient insights in various projects. Whether you’re building a tech platform or developing a new therapy, collaborating with patients is a must. The problem is, where do you find the right patients to work with? How do you locate the correct insights that add value to your company? While it may seem you just need to consult with your target audience, the answer is not that simple.

Modern Problems Require Modern Solutions

Acquiring patient insights should be treated with the same level of care and involvement as any other project requiring the input of subject matter experts. That being said, finding the right subject matter expert is critical.

From a lawyer’s perspective, you wouldn’t bring a plumber in to testify as an expert witness in a medical malpractice lawsuit. So why would you bring in just any patient to evaluate your project?

I’ve been involved with enough projects that I could author a book on horror stories involving patient insights gone wrong. Unfortunately, NDAs prevent me from sharing these stories in great detail. So let’s dive in to some of the major mistakes I’ve seen over the last few years, and how your organization can avoid them.

  1. Patients don’t understand the goal(s): Focus groups, advisory boards and interviews should have distinct endpoints for patients. This means outlining the topics of discussion and what your organization hopes to learn. I have sat in far too many advisory board meetings where the patients are confused by what the meeting organizer is asking. In the end, everyone is frustrated, time and money have been wasted with very little actionable information gathered. A simple “table of contents” for the meeting goes a long way.
  2. Meetings with no breaks: No one wants to sit around talking about their frustrations with healthcare for four hours without a break. Has that happened? More times than I can count. Never ignore the power of a break. It keeps everyone engaged and focused. Side note: providing snacks is a huge bonus but be sure to clear any dietary restrictions with patients ahead of time.
  3. No compensation: You wouldn’t dare not pay your consultants for their services, so why would you treat patients differently? I am shocked at certain companies who put together patient advisory boards and refuse to pay them. Meanwhile, employees who work with these “volunteer” advisory committees are posting about their company expense accounts on Instagram (you know who you are). Not only is that poor form, it makes it seem like you don’t value patient input. When you do this, you miss out on the most valuable feedback, the kind that can help you scale projects and receive great ROI. Like the old saying goes, you get what you pay for.
  4. Bringing in the wrong patients: Patients who get into arguments about which pharmaceutical company they hate more, talk over others, dominate the conversation, or just like to hear themselves talk. I could write blogs every day for a year just on this. It is critical to have a vetting process before selecting patients for certain projects. One on one interviews don’t require much vetting, but putting together an in person meeting or advisory committee where groups of patients will be working together warrants more attention. As a patient who also participates in these projects, it is a major headache. One rogue person can throw off the entire meeting and impede on the amount of information you collect. It is critical that you throughly screen potential participants and pay attention for any signs that there may be issues with some of the behaviors listed above.
  5. Confusing professional patients with “Patient Professionals“: Perhaps they work in healthcare, own a business, work in marketing, or practice law (shout out to my fellow lawyers out there battling chronic conditions). These are the patients who are balancing their “new normal” living with a health condition while participating in society. They are a gold mine of knowledge, experience, and fantastic analytical skills. These are the people I reach out to when I am putting together a team on behalf of a client. “Patient Professionals” not only share their perspectives living with and managing a condition, they can also contribute their expertise gathered from their career field. For certain initiatives, companies need to seek out these superstars and work with them.

The overall message here is that depending on your project and your goals, you have to find the right patients to work with. Too often I see companies rush to put something together, and they fail to get the feedback they need to move forward. Don’t make these mistakes, and you are on your way to obtaining great ROI working with patients.

Are You Actually Reaching Patients?

It’s a simple question, regardless of what product or service you provide, are you getting your message out to patients and meeting your goals?

Perhaps you’re struggling to grow your social media following, the number of patients downloading your app has slowed, or are having difficulty figuring out creative ways to recruit for a clinical trial. On the other hand, you may be hearing that you should incorporate the patient perspective into a project, but don’t know where to begin. It’s daunting to jump head first into a new initiative involving patients without much guidance.

So where do you begin? And what are the best steps to take when engaging with patient communities on your products?

1. Find the right patients/advocacy organizations. This is much easier said than done. Whether you’re looking to target a specific disease community, or addressing a shared symptom across multiple conditions, finding knowledgable, connected and engaged patients is hard work. Proper vetting and due diligence in this area can be tough, especially if you’re unfamiliar with a particular disease space.

2. Form partnerships that are beneficial to both sides. Patient insights are valuable, and patients/advocacy organizations should be compensated like any other consultant your company hires for work.

3. Have a contract. Clearly defined expectations establishing objectives, deadlines, compensation, confidentiality and length of engagement are critical. Too often, patients and corporations are not memorializing their agreements, which results in missed opportunities.

4. Set benchmarks to measure progress. Some projects require learning as you go. Work with your team and patients to set up progress checks along the way. If you find you’re not meeting important milestones, readjust your execution. In many cases, you will need patient and participant feedback to see how you’re doing.

Patient engagement is so much more than just sharing photos and links on social media channels. Unfortunately, most healthcare companies miss the mark, and hire folks who fail to fulfill a full cycle of communication. Depending on your goals, your engagement strategies will differ.

If you’re looking to elevate your patient engagement and interaction, let’s chat!

Sinkholes, Not Silos

At every conference, someone is talking about Pharma’s “silo” problem. Information, ideas, projects, all trapped within a small area just waiting for someone to come along and break them out. Patients hear about this all the time, and are often asked for input on how to help break down those silos.

The problem is not silos, it’s sinkholes.

For patients like myself, the quest for answers to manage and overcome our conditions goes well beyond just Pharma. It starts at cell line research, moves to translational models, then finally arrives to those Pharma silos. Every step in this process is a deep abyss, void of any guide to climb out of each hole to reach the next.

For patients and caregivers pursuing treatments, these sinkholes not only appear bottomless, they’re a behemoth. Understanding the complexities of each one, exploring and tackling all the issues before moving on, while avoiding costly mistakes along the way is overwhelming (to put it mildly). However, this is the road we patients and caregivers must take to find treatments and cures for our diseases. If tackling the silos in Pharma is the focus, most of us will die well before we ever get to human trials for drug candidates.

For patient organizations driving drug development, building bridges over these sinkholes to connect the dots is critical. Time is money, and rare disease groups struggle to reach fundraising goals. Not every disease has a celebrity parent or patient who can attract big donations to sustain programming. Few conditions are “large” enough in the rare community to have groups that can divide and conquer. So any setback can be fatal, and with a race against time to find life-saving treatments, no one has time to sit around discuss how to build a bridge.

So why sinkholes? Simple, the hard work conducted in various stages of drug development end up entrenched within groups and companies. As time goes on, it becomes difficult to relocate that knowledge and product across a bridge. The burden falls on patients and caregivers to make this happen, but they usually fall short of understanding the complexities of each of these sinkholes, and have limited time to invest in mastering them while managing the complexities of living with a rare disease. The problems get deeper and deeper as time goes on, so calling it a silo does not do it justice.

I tell my non-profit clients the best way to overcome these obstacles is to create educational programming for disease communities, and for my industry side- fund educational programing through disease-specific non-profits. Each group has varying levels of understanding on the drug development process, so there is no “one size fits all” system that can work across the board. Individually tailoring these initiatives pays dividends, but you have to do them right. Patient and caregiver communities are a driving force in drug development, so it is wise to utilize their advocacy throughout clinical development.

My prediction is over the next decade we will see a shift in how patient groups work with industry to defeat the sinkhole problems that plague their communities. We will also see industry become more focused on building lasting relationships to make this happen, which in turn will help with clinical trial design, recruitment, and retention.